We went this morning to get blood drawn to see where Alexis's blood counts are. Amazingly, she didn't even cry or flinch. She just held out her finger, let her cut it, and squeeze out the blood like it was no big deal. She is such an amazing little girl.
We got the results this afternoon that her counts had actually continued to go down this week, despite us holding on administering chemo since Sunday. Her ANC is down to a menial 84. So, we will continue to hold chemo, keep her home from school, and keep her in a bubble to protect her. This means cancelling her girl scout outing at the Magic House Friday as well as a carnival we were going to attend on Saturday. Worth it to keep her safe, though.
Although her looking so well makes it surprising that her counts are so low, this is really "normal." This second year of chemo is called the maintenance stage. Although it may sound easy, maintenance is all about maintaining good levels, not too high and not too low. In order to do this, we test her blood levels every month or if she gets a fever higher than 101 (automatic hospital). If the levels are high, they increase the chemo, if they are lower than a certain level, they cut off the chemo. Previous to her hospital stay, Alexis was at 150% of the baseline level for her chemo. Once her counts are low, she is cut off chemo. This is the cycle that we will go through all year as they try to strike the right balance between giving enough chemo to knock out the leukemia and giving too much to knock out her immunity. We go up, up, up on the daily and weekly chemos until they break her and then let her recover and then start all over again. It's all a maintenance game. So, it isn't a surprise that her counts went down. We will now wait for them to come up and then re-start the chemo when her body lets us know it is time.
Thursday, January 28, 2016
Wednesday, January 27, 2016
Homeschool
Alexis has been home all week due to her low counts. Luckily, she is eligible for homebound services. So, for every day she misses, she gets an hour from a tutor. She has a new tutor, and she has been coming to work with Alexis on math and reading. Beats mom trying to homeschool her, as we tend to battle when it comes to working through educational things that are hard. We are very grateful for this service, so hopefully she won't fall behind.
This has resulted in us getting to do a little more fun things as well as experimental school, like building a terrarium. So much better to get to do fun things instead of battle over boring math!
We have had great friends that have been running the boys into school and out each day, so Alexis doesn't have to walk through those germy hallways. We are keeping her in a bubble as much as we can.
This has resulted in us getting to do a little more fun things as well as experimental school, like building a terrarium. So much better to get to do fun things instead of battle over boring math!
We have had great friends that have been running the boys into school and out each day, so Alexis doesn't have to walk through those germy hallways. We are keeping her in a bubble as much as we can.
Sunday, January 24, 2016
Homebound
Alexis's oncologist was on a 24 hour shift, so she made a quick trip into the room early. Of course our early riser was already up and almost had a whole game of life in the books by 6:00am. She mentioned that Alexis's counts had gone down dramatically, and her ANC dropped below 500, which is the magic number that says you don't have any immunity. She indicated that Alexis would probably be there for a few more days as a result.
Laura took the boys to the Magic House, as Conner has been begging to do that for about a year. However, it is always packed, so we typically avoid it with Alexis. Since she was in the hospital, we figured this was a good time to let the boys go without Alexis. They had a great time
Alexis, in the meantime, was at the hospital getting the news that the doctors felt comfortable enough with mom and dad's care that they would let Alexis go home and be monitored carefully there. They also decided to give her her first antibody infusion, called Intravenous Immunoglobulin. It is basically plasma that they hope helps infuse her body with antibodies to fight the HMV virus that is giving her difficulty. They also will start her on an oral antibiotic. These two should help her fight the virus and pneumonia she has despite her lower immune system.
Tonight, we are all tucked in the house together. That is always such a great feeling!
Laura took the boys to the Magic House, as Conner has been begging to do that for about a year. However, it is always packed, so we typically avoid it with Alexis. Since she was in the hospital, we figured this was a good time to let the boys go without Alexis. They had a great time
Alexis, in the meantime, was at the hospital getting the news that the doctors felt comfortable enough with mom and dad's care that they would let Alexis go home and be monitored carefully there. They also decided to give her her first antibody infusion, called Intravenous Immunoglobulin. It is basically plasma that they hope helps infuse her body with antibodies to fight the HMV virus that is giving her difficulty. They also will start her on an oral antibiotic. These two should help her fight the virus and pneumonia she has despite her lower immune system.
Tonight, we are all tucked in the house together. That is always such a great feeling!
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